A Failure to Measure Up; On Mental Health, Twin States Lag

(Editor’s Note: This article was published July 19, 2015. It’s part of the Uneven Efforts series.)

Observed from a distance, Vermont and New Hampshire may seem very different politically as well as in their approaches to health care reform.

Vermont has become a beacon for proponents of government-can-and-should-do-it liberalism, with a willingness to at least talk about taxes and to use government to address serious social problems.

And — at least until a recent budget crunch — the Green Mountain State sought to be a leader of a movement toward universal, publicly financed health insurance. Already a higher percentage of its residents are covered by health insurance than those of any states except Massachusetts and Hawaii.

By comparison, New Hampshire is often seen as a bastion of small-government conservatism. It has no sales or income tax and little appetite for ambitious public undertakings of any kind.

Only after a protracted battle did New Hampshire agree to take on a federally funded expansion of the Medicaid program that provides health insurance to some low-income residents. The future of that program expansion remains the subject of partisan contention.

Yet local headline writers and commentators — noting similarities in their economies, geographies and populations — frequently refer to Vermont and New Hampshire as the Twin States. And when it comes to mental health care, that label seems to apply.

Vermont and New Hampshire have each promised to strengthen community clinics and services for the mentally ill, while paring back the role of large psychiatric hospitals. Those long-standing efforts are part of a nationwide mental health care reform movement — often referred to as deinstitutionalization — underway for more than five decades.

Yet the siblings share a character flaw. Although tens of thousands of residents of each state cope with serious mental illness, neither state has managed to provide care that fully measures up to its own stated standards for quality and quantity.

A 2009 report card by the National Alliance on Mental Illness gave mental health care in both Vermont and New Hampshire a “C.” While that trailed the four northeastern and two other states that earned B’s, it was better than the six states that got F’s and the nationwide grade of D, although little consolation to the mentally ill who waited for care.

While that report might not reflect some recent changes, the underlying reality is that in the five decades since the federal government began providing some support, community mental health care has never been adequately funded in any state, said Sita Diehl, NAMI’s state policy and advocacy director.

Over the years, commitment to reform has fluctuated in each of the Twin States. At times, each has stepped forward as a leader in deinstitutionalization and the provision of community mental health services. At other times, each has lagged behind, often under the weight of budget pressures.

New Hampshire broke with its penchant for flinty conservatism and emerged during the 1980s as a national leader in strengthening community mental health care organizations and services. But what, for a time, was widely viewed as a model system eventually deteriorated due to budget cutting and an increasingly hostile political environment.

“It was amazing how fast they degraded a system that took us 20 years to build up,” said Robert Drake, a one-time leader in community mental health services in New Hampshire who is now a psychiatrist at the Dartmouth Psychiatric Research Center in Lebanon.

By 2012, cutbacks and retrenchment in mental health care in New Hampshire had prompted advocates to file a federal lawsuit. A settlement agreement finalized in February 2014 spelled out the state’s obligation to stop crowding patients into large institutions and included a five-year to-do list for improvements in community-level mental health care.

But budget pressures continue to shape and restrict those efforts. A recent report by a court-appointed expert overseeing the settlement found the state had already missed deadlines and targets called for by the young agreement.

In Vermont, mental health care policy and practice have sometimes — but not always — buttressed the state’s progressive reputation. During the 1950s, almost at the dawn of efforts to move mental patients out of large institutions, doctors at the Vermont State Hospital in Waterbury were pioneers in efforts to cure rather than just warehouse severely ill patients.

But decades later, conditions in that same aging hospital led to repeated sanctions by regulators and suspensions of federal financial support. Only after a 2011 storm destroyed the hospital did the state pass Act 79, a comprehensive mental health care reform law that Gov. Peter Shumlin signed in April 2012. “We will no longer rely on a decrepit hospital to house these patients, but instead provide all levels of care in a variety of settings closer to their homes and communities,” he said.

Currently, Vermont can at least claim to be trying harder. In 2013, it spent $183 million to care for its mentally ill, according a tally by the federal government. That matched spending in New Hampshire, a state with twice as many residents. Vermont has also outperformed New Hampshire in various rankings and gradings of state mental health care systems by advocacy groups and federal health care agencies. ( See related story, below. )

Yet Act 79 in Vermont, like the settlement agreement in New Hampshire, has produced limited results while troubling signs of failure persist in each of the Twin States. And in efforts to treat and provide relief from such debilitating illnesses as depression, schizophrenia, bipolar disorder and post-traumatic stress disorder, every failure can be devastating.

In both states, hundreds of lives are lost by suicide each year. Mentally ill patients in the midst of crises are stranded in hospital emergency rooms, waiting with minimal care until psychiatric treatment becomes available.

Meanwhile, community care in each state seems caught in a vicious cycle of inadequate revenue, low wages and staff turnover. That limits the availability of mental health care that, in addition to saving lives and easing suffering, could reduce admissions and ease discharges at the expensive state-supported hospitals that offer high-level care.

In a 2014 application for a Medicaid waiver, New Hampshire described its offerings of mental health and related care as “financially fragile” with a delivery system that was “fragmented.”

In Vermont, a legislative leader noted “the significant instability of the current mental health system.”

In each state, seemingly perpetual budget pressures have slowed reform efforts. On several occasions, infusions of federal money have resulted in some progress.

But despite some attempts to firm up and make consistent financial support for mental health providers in each state, future prospects remain uncertain.

Claire Munat, an advocate who operates a lodge in Londonderry, Vt., recalled an early sign of her son’s schizophrenia: the padlocks that he began putting on his dresser drawers.

In later years, she visited the Rutland motel room where he was living. “I used to come up once a month and take him grocery shopping,” she said. “And I’d bring him back to the apartment and he’d say, ‘I hate you and I never want to see you again.’ ”

By then, she understood those outbursts as symptoms of his disease. “I know this is perfectly natural and he doesn’t mean it,” she said. “It hurts … but ignore it. It’s illness.”

The National Institute of Mental Health defines a serious mental illness as a mental, behavioral or emotional disorder that within the past year impaired a person’s ability to eat, sleep, speak, read, concentrate, communicate or carry out some other major life activity.

Enough adults in the Twin States suffer serious mental illness — about 45,000 in New Hampshire and 29,000 in Vermont, according to federal estimates — to fill the seats at a Patriots game in Gillette Stadium, and still leave thousands in the parking lot.

Diana Slade, 63, of Springfield, Vt., has confronted mental illness as a patient, a peer group leader and an advocate. “How would you explain psychosis?” she asked.

“Your mind doesn’t know what’s real and what isn’t. You don’t know where you are. You don’t know what’s going on.”

Slade was diagnosed with bipolar disorder in 1980. She has been hospitalized 11 times, had a psychotic episode in 2011 and turned to a peer support group for help coping with a 95-pound weight gain that was a side effect of her medications.

Slade has defied the social pressures that silence many of the mentally ill but noted that it remains difficult to be heard: “People don’t listen to you because they look and they stigmatize you because of the list of psychotropic medications you’re on.”

Community clinics and outreach and care teams comprise the front lines for mental health care in Vermont and New Hampshire. Housing, employment and peer support services and small residential treatment centers complement those community services.

Meanwhile, state-supported hospitals provide the systems’ last lines of defense, offering the highest level of care to the most acutely ill patients.

At least, that’s how it’s supposed to work.

That approach is part of the legacy of a nationwide deinstitutionalization movement that originated in the 1950s, got an initial wave of federal funding in the 1960s and has been implemented unevenly in most states ever since.

Census data for 1955, prior to widespread efforts at deinstitutionalization, found the population of state and county mental hospitals in the United States had reached what was to prove an all-time high of 559,000.

Early deinstitutionalization efforts coincided with psychiatrists’ growing use of Thorazine, a drug developed as a surgical anesthetic, to medicate patients with schizophrenia and other mental illnesses. The use of Thorazine and other drugs to treat, or subdue, the mentally ill soon became widespread — as well as profitable for pharmaceutical companies. During that same period, revelations about inhumane conditions in large state mental hospitals generated public sympathy for deinstitutionalization.

More momentum came from the new notion that the mentally ill could be treated instead of just hidden away. An attempt to put that idea into practice in the 1950s at the Vermont State Hospital was described in a 1995 paper in the American Journal of Psychiatry as “an innovative pioneering rehabilitation program.”

Doctors at the Waterbury hospital chose 269 of their “most severely disabled and chronically mentally ill” patients with schizophrenia and offered them “open-ward care in homelike conditions” — first in the hospital, later in halfway houses and outpatient clinics. Treatments for these patients — one participating doctor described them as “back-ward ‘hopeless cases’ ” — included newly developed drugs; activity, group and industrial therapy; graded privileges; vocational counseling and self-help groups.

Follow-up studies two and three decades later found that more than half of the patients treated in the Vermont program and in four similar programs in other states had “considerably improved or recovered.” Reformers used such findings to seek to redefine the role of state mental hospitals. Within a decade the population of United States mental hospitals had declined by about 15 percent.

Reformers also called for the development of clinics and services that could deliver care and support outside of hospitals. In that framework, community facilities and services were viewed as critical ingredients for deinstitutionalization.

To that end, advocates for deinstitutionalization assumed — or, at least, hoped — that money that had previously been spent caring for the populations in large hospitals would be redirected to community services.

The federal government also boosted deinstitutionalization.

Legislation in 1965 that created the federal Medicare program to provide health insurance to seniors and people with disabilities and the joint federal-state Medicaid programs that insured low-income families helped accelerate that trend.

As a 2010 audit of New Hampshire’s oversight of community mental health care noted, “Medicaid incentivizes community-based care by reimbursing services to Medicaid-eligible adults in the community, but not services provided in an institutional environment.”

But deinstitutionalization rarely worked out according to plan. As Jeffrey Rothenberg, a former community mental health worker who now runs Vermont’s flagship mental hospital, observed, “I think if you go back over the past 50 years of the history of deinstitutionalization you’ll find the money did not follow the people into the community.”

That resulted in poor care, according to David Mechanic, a professor of health care policy at Rutgers University who has written about the impact of such imperfectly realized deinstitutionalization: “Patients were commonly returned to community settings without adequate follow-up or access to the range of services needed to facilitate function and allow a decent quality of life.”

Tomorrow: After decades of gains and losses in efforts to desinstitutionalize mental health care, the Twin States’ reform obligations are spelled out — in a 2012 law in Vermont and a lawsuit settlement in New Hampshire.

—

This series is part of project that was supported by a health care performance reporting fellowship from the Association of Health Care Journalists and by The Commonwealth Fund. Valley News staff writer Rick Jurgens can be reached at rjurgens@vnews.com or 603-727-3229.